Newsletter Number 12    Summer, 2002

Nevus_Network_Surpasses_800_Members!

An_Incredible_Gift....

Teen_with_Giant_Nevus_Survives_School_Daze

Minimizing_the_Trauma_of_Doctor_Visits

Famous_Quote

Our_New_Slogan

Just_a_Regular_Guy

Editors'_Corner

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Join_Nevus_Network

 Nevus Network Surpasses 800 Members!

Our mortality rate is about 2-3% for those with a bathing trunk or torso-type giant nevus and still at 0% for those with a scalp, facial, or extremity nevus!

Members with most number of surgeries in 2002:

Our statistics have been updated since this newsletter was published in 2002 and are found here: 2004 stats

All Information Provided as a Public Service Without Medical or Legal Responsibility. The opinions expressed in the Nevus Network Newsletter are those of the writers and do not necessarily reflect the views of the Nevus Network or of the medical community at large. You must not act on the medical information provided by the Nevus Network but must consult your own personal physician for all medical advice. All information is of a general nature only and may or may not be applicable to you or your child’s individual situation. © 2002 Nevus Network This newsletter may be photocopied without permission for support group and general informational use.

An Incredible Gift.... 

I am 51 years old and I was born with a brown birthmark on my face about 5 inches by 3 ½ inches in size. Every doctor I went to called it something different, so I’m not sure exactly what type it was. It was smooth like the rest of my skin, but brown in color. I am assuming it was a congenital facial nevus. I tried many different types of laser treatment to remove it, which were all fruitless and expensive. I spent about $10,000 out of my pocket trying to get it lasered and it always grew back. Finally, when I was 46 years old, I went to a dermatologist willing to try the ruby laser on me. In about 15 minutes without anesthetic even being needed, she treated the birthmark. Of course, we weren’t sure what would happen. It scabbed up and when the scabs healed, the birthmark was gone. It was a miracle and it only cost $50! But we still didn’t know if it would reappear. Over the course of 3 years, I had brown spots come back every few months and had them immediately retreated with the laser. I have not had a brown spot return in about a year now. This has been such a gift of freedom for me. I also had a complete laser peel of my face to even out the two sides. The skin on the birthmark side looked ten years younger compared to the other side from wearing makeup all the time and having no sun exposure.

I have no pictures of myself with my birthmark. I looked high and low without success. I may have to look again. Part of my emotional problems comes from the fact that I was teased mercilessly as a child. One kid taunted me that I “got in a shit fight and shit stuck to my face.” My parents also did not accept me the way I was. That made it a lot harder. I never felt my mother loved me. After reading some of the stories on various websites, I have a little more understanding of her trauma. But that is no excuse. When I was ten years old, I started wearing a coverup type of makeup. Not only was I praised for covering the nevus up, but also I was expected to cover it perfectly. This is quite a lot of stress for a ten-year-old! On top of this, my father also physically abused me and my mother was an alcoholic. My father might have been, too. I just can’t remember. Obviously, I lived with a lot of family stress in addition to the birthmark.

The nevus affected every area of my life, as I would never let anyone see me without makeup. The hiding prevented me from participating in many activities and was traumatic as well when I went to college and lived in a dorm. Luckily, my roommate was my best friend, someone who accepted me the way I was. When I went to restaurants in the daytime with people, I was always aware of the light and told people I couldn’t take glare in my eyes. That way I could sit in a seat where it was darker and I could be sure they couldn’t see my birthmark through the makeup. No one could ever see it; this was just my paranoia.

I am in my second marriage for 24 years now. The first lasted 3 years without kids. I have 3 children, ages 21, 19, and 14, 2 boys and a girl, my baby. I was also afraid my children might have a birthmark, but they didn’t. Even after I was married with children, I wouldn’t answer the door if I didn’t have my makeup on. If my children wanted friends to sleep over, I felt ashamed if they saw me without make-up in my own home! I could never just roll out of bed and take my kids to school. I had to have makeup on. Sometimes, the makeup wouldn’t go on properly and I would have to do it over numerous times until it was “perfect.” I would cry, then get angry, which would only make it worse. You can imagine the scope of the emotional consequences. I’ve never felt that I was good enough, which may be why I was such a perfectionist about everything until I got into recovery. I know that having a birthmark on my face has done some good things for me as well. It has certainly kept me humble and given me the ability to empathize with others that aren’t quite “perfect.” Even today, I am still way too vain. It’s no surprise that I have bipolar disorder as well. My husband and I are very happy now that I have my bipolar disorder under control. I’m lucky there, too, because my husband adores me and has stuck with me through thick and thin. And I was never easy to live with. I’ve heard that bipolar comes from too much trauma as a child as well as a chemical imbalance and heredity. My father was also bipolar. So I’m not surprised I am bipolar. I feel lucky that I’ve had a wonderful life overall so far. At 51, I’m so excited to have my birthmark removed. It is truly an incredible gift and I wouldn’t want to go back a day. —Karen F, San Juan Capistrano, CA

Editors’ Note: Laser has had mixed results in removing facial nevi. Unfortunately, most members have not had as good results as Karen. People having laser resurfacing will typically need to use an antiseptic scrub and watch for infection and take a medicine such as acyclovir to help prevent shingles because the laser-burned skin is temporarily more prone to infection. Some members also get an uneven “polka-dot” appearance after the treatments. More research is needed. The issue of whether laser, which burns away the excess pigment with an intense beam of light, could also “rile” up the nevus cells left behind and increase the risk of cancer is still not resolved either. But we’re glad, especially for Karen, that this works well at least some of the time!

Minimizing the Trauma of Doctor Visits 

Anyone with a giant nevus eventually experiences stressful interactions with medical staff. Unfortunately, this will only increase as the overall quality of our medical care continues to decrease. When I was 19 years old, I was put on “display” (with my permission, but I was too timid to refuse) in front of about 20 young male medical students. Men I might have dated were now staring at me naked like I was a freak. I wanted to do my part to help further medical knowledge, but this was too much for me at age 19. It was so traumatizing that I refused to see any skin doctors for 10 years! Now I am assertive enough to just say NO on the days I’m not up to handling such a “display.”

But even a more recent doctor visit stands out in my mind as stressful. Several years ago after procrastinating as long as I could, I made an appointment for a skin checkup by a new dermatologist I had never seen before. The doctor himself initially seemed nice. We were both involved in my skin exam and I was standing naked in the exam room with my bathing trunk nevus, my skin graft scars, and my dermabrasion scars all clearly visible. Suddenly someone opened the exam room dor without even bothering to knock and walked right in. It was the same medical assistant (MA) who had initially placed me in the room. She “spotted” me, her mouth dropped wide open at the sight of me, and she appeared speechless in shock. Unfortunately, she left the exam room door wide open so that any stranger walking or standing in the luckily empty hallway could have seen me buck-naked. I had not yet developed enough skill in self-assertiveness to protect myself, so I did nothing. The doctor, who should have known better, did nothing. The MA didn't know what to do, so she simply backed out of the room without a word. Thank goodness she closed the door behind her. In the meantime, the doctor continued the exam as if nothing had happened. Since I already knew the doctor was only given 10 minutes for my entire appointment and I really needed my long-overdue skin check, I did the same. I didn't want to make a scene, because then he might get distracted from checking my skin thoroughly. I only have catastrophic medical insurance by personal choice, so I pay for all routine medical care myself, and I wanted my money's worth! When I got home, I finally had time to think and I got angry--at the MA for her inadequate training and for her rudeness in barging in without knocking, at the doctor for not dealing with the MA, even though I realize he was an employee just as she was and had no supervisory capacity over her, and at myself for accepting it all and doing nothing. The incident brought back all the feelings of vulnerability that often resurface for me at doctors' appointments. But since I have a nonremoveable BTN, and an ideal method of making instant, natural-looking skin hasn't been discovered yet, I must cope as is, especially since my surgeries left me worse off than before. Besides, why does my skin have to look like that MA's? Why can't I look like myself? I may look different from her, but it's actually normal for me.

I didn't know what to do to prevent these situations. One day I recounted the incident to Helga, age 60, who also has a BTN. And she came up with an ingenious solution! She suggested I take some photos of myself and prep everyone about my skin before the appointment while I was still clothed and in control. Just recently I had a chance to test out this solution. My personal doctor of the previous 7 years had abandoned practicing medicine because she said she couldn't handle the stress of the job anymore. She is only 42 years old. I really couldn't blame her, as doctors and nurses are certainly under siege nowadays. But now I had the hassle of trying to find a new doctor for routine health care and for Pap tests. I hate going to new doctors! I always get very anxious when I have my Pap test since my BTN is on full display and my last one had been 2 years ago. (Editors' note: Depending on the individual, Pap tests should generally be done every 1-3 years for the prevention of cervical cancer.) I’ve learned that most health care is self-care and I try to do the best I can to avoid going to doctors except for preventive care unless absolutely needed. I spent way too much time as a child with doctors for the nevus and again as an adult for another unusual condition called reflex sympathetic dystrophy.

But I needed to go, so I picked out a new doctor and made an appointment. Then I took the Nevus Network info sheet, our poster sheet, a cute photo of me showing my nevus wearing a swimsuit, a photo of me without any clothes on at all, and a couple of anonymous photos of some of our Nevus Network poster children with me to the appointment. I felt there was more safety in numbers and I didn't want to face that new doctor all alone, so I took some of you along with me! (Thanks again to all those who have given permission to share photos.) After being taken to the exam room and while still clothed and confident, I showed the MA my photos, explained my skin to her, and requested that she show all the info to my new doctor and to any necessary staff. She initially refused. I don’t think she wanted to take the extra time required, but I insisted saying, "No, I need to prepare you and the doctor so you all will understand my situation better." I also had all my other medical info conveniently written down because I already knew my doctor was only permitted 20 minutes for the entire Pap appointment, including all the paperwork, and I didn't want to waste any of our precious time together./

Well, this worked wonderfully! The appointment went very well. The doctor was young, beautiful, and had flawless milky skin. I was middle-aged, scarred up, and bicolor brown and cream with lots of brown spots. But I was nice to her and she was nice to me. She and the MA both acted appropriately and we all worked so fast together that she even had enough time to check my skin, thus saving me a second doctor's visit and some money to boot. Now I just hope and pray that my new doctor doesn't quit like the last one AND that I don't need to go to the doctor at all for another whole year! BJ, Lake Ridge, VA

Answer to Trivia question: Thomas Alva Edison (1847-1931), who quit school before he got his first job as a newsboy at age 12 selling candy and newspapers on a train. After he refused to go to school, his mother, a former teacher, taught Edison the basics at home. Almost entirely self-taught after that, he read and studied during train layovers. Edison went on to invent the light bulb and the phonograph and hold a world record of 1,093 patents.